There is only one answer to this - don’t let those who should be responsible for ensuring that adequate support and care are available for those living with Parkinson’s in your area get away with doing very little. Money is in short supply and organisations are under pressure to make cuts. In this climate, each has to fight his or her corner. There must be many others in your area who are in the same position. Are u in with them? What about the Uk Parkinson’s Representative in your area/. Can this person help? Do some research - what is available? What is needed essentially. Mobilise and make your voice heard|
Thanks Ian,
It’s good to be able to relate to someone else’s experience. I was quite sure it wouldn’t be Parkinsons, but gradually came to realise that it was more than likely. Nonetheless it was disappointing to be told, after a Datscan, that the diagnosis was confirmed. I am still inclined to think that it is just chronic arthritis. I have been using walking sticks for years, so nothing has changed there.
Fortunately I have excellent physios - been seeing one every week for years - the only thing that keeps me moving, and now I have one with neurological training. The exercises are interestiing.
Anyone following the PD Warrior programme, let me know how it is going.
I’ve just started an exercise programme with a Neuro physio based on PD warrior and lsvt and I think it will make a difference as long as I do the exercises regularly. The other guys on the course have been doing it for 8 weeks and they have all noticed improvements in their movement so I’m optimistic and will keep you posted …
Hi Jayne849
thanks for responding. Hope the exercises go well. I am debating as to whether to try the online 10 week PD warrior course. I am seeing my neuro physio later today, so will talk to her about it.
Keep me posted as to how it goes. (By the way, wat is “lsvt”?
I am sure you are right about the needing to do it regularly, but the energy required looks quite demanding. Not sure if I will be able to keep it up.
Good luck to you.
Lsvt is another exercise programme similar to PD warrior. I don’t think you have to do all of the exercises everyday, just try and do some. Your Neuro physio will be able to give you some exercises and also assess that you’re doing them properly.
I’m going to the gym today and will be walking on the treadmill and going on the bike and then I’ll do some of the exercises from the physio. She’s given me 3 that I have to do everyday as homework and will give me some more next week.
Hope that helps and good luck this afternoon.
Jayne
Thanks Jayne849
Had a good session this afternoon - already seeming to be more upright and walking better. I will be at the gym tomorrow, having had a personal trainer for years - she managed to keep me moving. I do half an hour’s exercise and then have half an hour’s massage, followed by a chat and a cup of coffee - I know that may not be a good idea, but it is a treat to look forward to. I used to love my coffee every morning but now find I prefer Earl Grey tea.
Has anyone else found their tastes change with PD? What is “in” and what is “out”?
Glad you enjoyed the physio, I’m certain it makes a difference. I’m signing up with a personal trainer next week as I don’t have a clue what I’m doing in the gym other than the treadmill. I think it’s great that you have your coffee to look forward to, we’ve got to have some treats! I didn’t think that my tastes had changed but now you mention it I don’t think I’ve had coffee for about 12 months and I used to drink loads. The other thing is I seem to get heartburn nearly every day and I never used to get it, does anyone else get it?
A personal trainer makes a great difference - he/she will make sure you are using the machines correctly to achieve the best benefit. They are also quite good at motivating you when you really don’t feel like doing anything.
Having said that I must admit to having just phoned in to apologise for my absence. Yesterday’s christening was a great day out, but exhausting, and I am now going back to bed to read the papers.
Hopwfully back to normal tomorrow.
You’re allowed a day off now and again, especially after a hectic weekend…
That’s my thinking with the personal trainer, I’m less likely to back out if I’ve got someone spurring me on (plus I’ll be paying for it and us Yorkshire folk don’t like parting with our well earned cash!!).
